all posts, community, miscellaneous

a community is like a spider web

spider web formed on green leaves
Photo by Johannes Plenio on Pexels.com

Jake and I had been talking when he said something that made my brain go “OH!” and basically re-wired years of misguided searching. What he said to me was, “I think you are confusing community with suburbia. You grew up in a suburb, but you had a community… most of the time suburbia is not synonymous with community.”

Now that may seem obvious to you readers, but for me it was an eye opening moment. For years I have waxed poetic about how and where I grew up, equating the two in my mind and constantly yearning to find that again as an adult, in a new place. We actually currently live in a suburb (though a weird one because it acts like a seceded city from a larger nearby one. It also gets terrible amounts of run-off traffic that only a coastal town abutted by a huge city can get).

When Jake said that to me it hit me that that was what is missing from here versus where I grew up. I lived in the same place from ages 11-23ish and got to re-invent my life in my community over and over again. I had friends in the area sure, but even after many of them came and went I had their parents, my neighbors, new co-workers with whom often shared people in common who we knew, random encounters with townsfolk, etc. The life felt interwoven and connected despite me spreading my wings in multiple literal towns.

So while I was taking a bath today I was thinking about my community and what it takes to have one and why I don’t have one here. Some of it is definitely a product of time. I have only lived in this town for 10 months now, most of which I was pregnant for or had just given birth, and for all of it I was sleep deprived and battling topical steroid withdrawal. So yes, I haven’t been spreading my roots as aggressively as I could have. I started out strong: when I moved here, I baked cookies and delivered them to neighbors’ houses with hand-sketched phoenixes as a weird get-to-know-you thing; and then I also made it a point to meet all the librarians during multiple library visits, and also explored the farmers market on occasion. But then between my physical condition and my pre-to-post baby phase, I grew tired.

That and was hard to establish a deep connection when one is in different stages of life. Our neighbors are mostly all parents with kids who are between 9-19 years old, and the parents themselves are probably all in their 40s (I’m guessing). Many of the parents include one of the couple who is a state native, and if not born-and-bred in this town, they were probably born in one within a 15 mile radius, and thus lots of them have family around. Many of them are working, or randomly gone a lot of the time so it’s always a chance encounter when I do see them.

It’s also just a different type of town than what I grew up in. This is car community. I’ve tried to make it walkable to the extent that I love, but the sidewalks end randomly and the roads are hilly and windy, and people tend to speed aggressively. It was fine when it was just me on foot, but with Fiona in her stroller I just don’t feel as comfortable.

But how does this relate to a spider web? And why am I thinking about spiders when I have such a phobia of them? Well, I’ve been reading a lot of southern-set books lately (first ‘Midnight in the Garden of Good and Evil’ by John Berendt and most recently ‘The Prince of Tides’ by Pat Convoy), and the one thing they have in common is a deep-seeded love for their environment. They talk about the flora and the fauna and the smells and the colors as an important part of the experience around the stories they weave.

In The Prince of Tides (which is fiction), there is a background story within the story that talks about how black widow spiders helped save the family from a murderous intruder (because the children released the spiders all over said intruder) and how afterwards the family never killed another spider again, and it made me think about spiders and my own fear of them. Then when Jake and I were discussing community, I thought to myself, “hey, a community is kind of like a web” and that led to this post.

A community is like a web. And by this I mean that the ideas behind a web almost fully apply (if taken with creative liberties).

A web is built slowly over time,
One thin gossamer strand at a time
With the determination of knowing what it should look like
But innately, without blueprint,
With knowledge of its fragility
And understanding of the need for constant adjustment
As bugs and debris and miscellaneous items rend it broken.
It is made over an existing space
Be it flora, or the existing corners of a barn
Or something in-between
The web does not exist without some sort of baseline structure
But it can be recreated over and over again in new places
As need demands, thread by thread
Again and again as it suits the needs of its creators

Anyway, that’s where my mind was roaming today. I think it’s also why I yearn to move back to my parents’ area. I found a community I liked and now I just want to return to it so Fiona can experience it too. Maybe that’s lazy, but I make no excuses for it.

all posts, eczema hacks, treatments

“how doctors think” about eczema

assorted doctors tools
Photo by rawpixel.com on Pexels.com

A few weeks ago I finished a book called How Doctors Think by Jerome Groopman and oh boy do I have thoughts. First off I have to say that the book had its fair share of  downer moments because it had a lot of cases of patients with cancer who struggled with doctors to find plans of care that extend their life just a bit more.

But other than that it was full of all kinds of information about different schools of thought that doctors employ to help their patients. Two specific ones it mentioned included the evidence-based and algorithm-based approaches.

With the evidence-based approach, the doctor relies on existing research, especially those that have a large amount of studies behind them. The issue with this approach is that doctors often default to using said heavily-backed solutions without inquiring or considering less numerously-backed ideas. This could become a problem, say if a new drug has tens of studies done on it, all sponsored and paid for by the company that produces the drug, while an alternative medicine or treatment may have great results but only a handful of studies supporting it, In that scenario, it’s almost more of a research field monopoly,  rather that robust results that gives the drug the good reputation, causing the doctors to favorite it more. In relation to eczema, where these ideas can be applied is in understanding how to approach doctors in a way that doesn’t cause them to default to automatically prescribe topical steroids (the long standing, most heavily-researched atopic dermatitis prescription option) as the first line of action.

With the algorithm-style approach, the doctor can follow a flowchart style of logic that’s been proven relatively effective over time. Its basically like having a graph that has arrows from each option to a few subsequent options, like:

“Does the patient have X cluster of symptoms?

  • Yes = Prescribe drug A.
  • No = Run test 1.

Is test 1 positive?

  • Yes = Give drug B.
  • No = Run test 2.”

And so on, and so forth. The flaw with this approach is that it doesn’t allow the doctor to think outside the box, which Groopman argues can result in said doctor trying to fit a patient nicely into an existing “flowchart” result, even if there are some signs or symptoms that don’t quite match up with that diagnosis. This may be the case when someone has other co-morbidities too or when someone has common symptoms of two very different diseases (like this example of a woman who was using topical steroids and found out she had lymphoma). For this problem it can be useful to ask the doctor what are the best and worst case scenarios of diseases that fit the presentation of symptoms. Asking this can help a doctor think beyond their initial conclusion and more thoroughly work to rule-out other options.

Another significant point the author makes is that for doctors to really become better, they must remember their mistakes and use that vulnerability to inform their care. He gives examples of renowned doctors who literally have binderfuls of their mistakes that they reference to maintain humbleness and act as a forcing function to always push themselves to improve. This might be a more difficult conversation to have with your doctor as I imagine no doctor enjoys being asked, “so let’s talk about all the times you royally effed up with patients”.

One last subject the book addresses that I’ll bring up is the pressure doctors implicitly face when they accept any form of samples or gifts from big pharma companies. It’s not that all pharma-marketed medicines are bad, but that you want your doctors’ reasons for choosing a specific product to come from no other influence than that they believe it works and have seen that said products have good efficacy. This is why it can be hard to decide whether or not to use samples a doctor gives you as you don’t know that they really think it works or if they just happen to have them around from a sales pitch. A question to ask in this case might be “have you seen a lot of positive outcomes from use of X product?” Another way to foray into this territory with a doctor is to ask about long-term results, as well as what are any known side effects (this could apply to eczema-related products like topical steroids to non-steroidal creams or biologics or brand-name moisturizers). If something sounds too good to be true, it’s probably fairly new to the market and so the longevity of effects haven’t been tested. A further question to ask is if there are any cheaper off-brand equivalents because those usually only come out after something has been on the market for a while.

These are just a few of the points that the book made, that I’ve tried to connect back to how to talk with your dermatologist about eczema. There are more factors involved that could make the process more convoluted or impossible in some instances, but I do think these provide a light foundation to attempt to build a stronger relationship with the right doctor.

Speaking of the right doctor, I have an older post that goes more into making sure you feel comfortable and that you have a good rapport with your doctor, which was another huge point Groopman made in the book. He explained that a patient who is difficult to treat, simply by having complex issues that don’t respond to more common treatments, often ends up being resented by the doctors, and as a result gets worser care. The suggestions in the book for overcoming these kinds of doctor-patient relationship issues is to say something like, “I know my condition is difficult” or “I feel like we got off to the wrong start” to help try to make the doctor aware of their negative emotional bias.

On the flip side, a patient that the doctor likes too much may also get worse care if the doctor makes overly sympathetic emotion-based decisions like skipping tests to not inconvenience the patient or by avoiding procedures that may cause the patient pain, etc. To overcome this issue, it can be as simple as saying “please treat me like you would a patient you knew nothing about”, and hopefully that should provoke the doctor into making sure they’re as analytical and diagnostic as possible again.

I’d love to hear about any particular experiences you’ve had with your dermatologists in the comments, and whether or not you agree with my suggestions, and also from any doctors out there reading this.

all posts, miscellaneous

on libraries

assorted books on shelf
Photo by Element5 Digital on Pexels.com

I mentioned this before but eczema has given me lots of time to read, partially because it keeps my hands busy to hold a book, and partially because when I have the worst of flares I don’t have the energy to do anything besides curl up in a ball on the couch with a blanket draped around me and turn pages while trying to minimize any movement of the rest of my body. Luckily the latter hasn’t happened in a while, but since I have gotten back into the swing of reading, I have renewed my relationship with libraries (pun intended). I had gotten my new town library card a while back but recently I have been aggressively making use of it. We’re talking 10 books at a time and steadily getting 1-2 more books each week (yes I have a problem).

Anyway, historically, I have always been a voracious reader. I have memories of being ten and sitting down under the playground reading fictional adventure novels while kids ran around me. This happened only if the book was magically compelling, and surprisingly lots of YA fiction novels are at that age.

I also distinctly remember the awkward moment when at a family reunion I was hiding away under a bed reading the newest Harry Potter book when someone sat on it. The mattress springs crunched above me uncomfortably, so I snaked out an arm and gently tapped the family member’s ankle, sending them into an understandable jump-off-the-ground-in-total-fear-mixed-with-surprise moment. I stopped hiding under beds to read soon after (partially because I grew too big).

I also remember years and years of trying to read during car rides while sitting in the back of my mom’s old Honda van on that way to visit some family, and feeling car sick from focusing on the words swaying about with the car’s inertia.

As I also love things that are free (catch me in my hand-me-down clothes even as a late twenty-something mom), my love for libraries is not much of a surprise. My earliest memories of libraries are glimpses of bright lig t shining through musly building windows and rows on rows of colorful books. I remember getting excited that I could pick out whatever I wanted and the smell of old books and how I loved feeling the pages of a wellworn novel. Those strong sensory experiences continue to evoke my love.

There are also unidentified memories of accompanying my Oma, my best friend’s mom, and many others to unfamiliar libraries on book returning errands, and memories of playing those generic learning games on those chunky monitors screens.

I remember as an elementary school student, that we had those book fairs (done by Scholastic Books I believe), which excited me to no end, and always happened in the library. I was one of those kids that liked to get some new books, and those cutesy erasers.

I remember as a teen, trekking up the half mile or so from my house to the local public library, often with my friend Julia, to see what books we could find next. We had voracious appetites for fiction and fantasy, and I remember ambling through the shelves often picking books to read based on their titles or their cover art when I had no specific “to-reads” in mind. When I moved back home with my parents after college, I restarted my walking sojourns to said library, mostly to resume my enjoyment of fiction novels in between work.

I remember in high school, after tearing my ACL and not being able to run track and field senior spring, I hung out in the library with my “potluck” friends (so named because our hangouts started via a potluck meal). My grades actually improved while there so I graduated with an even higher GPA thus avoiding the stereotype of “senior slump”. And it was there that I started Pet Sementary and had my first intro to Stephen King and to more adult horror books (I had enjoyed Goosebumps when I was younger).

In college I made myself a home at the science library (Cornell) on my free time, and started working their my sophomore year as a library assistant for work study. My now husband recalls always making sure to come chat with me when I was at the front desk as he was already crushing on me. I remember getting to work the closing shifts on nights and weekends and as a result, getting to be one of the last people in the library. I wasn’t a night person so that was often exhausting, but also a weirdly surreal experience as the  building that housed the library (called the science center) was generally emptied out on weekends at that point with most of the lights off. It was quite peaceful.

I remember my friend Becky and I staking our claim in a space and waiting it out in the college’s larger library (McCabe), working away until 10pm when they brought out the snacks. It was also a common library for group study as there were these study rooms on the upper floors if you wanted more privacy. I went back recently and some of the layout had changed (on the main floor at least) and it was so disorienting. Seeing a library change, even if it is for the better (which it was) is such a sucker punch to the memory.

For graduate school (MGH Institute of Health Professions in Boston) I would hide away in this attic-esque corner of the library with my friends, where we would study and sometimes practice physical therapy techniques on one another on the floor, but more often than not we would chat and enjoy life while simultaneously complaining about the breadth of material to study.

I once accompanied Jake last minute on a business trip to Ybor in Tampa, Florida. While he was doing his work thing, I decided to kill time by investigating the local library (the Robert W. Saunders Sr. Public Library). I had to walk about 2 miles to get there but it didn’t deter me. I always find it fascinating to see libraries in new states. I didn’t get a lot of time to explore it but I saw that it offers meals to those in need between 11:30am and 12:30pm and had different historical plaques and pictures about it like those below.

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I also worked in the Cambridge Public Library when I was volunteering for the Eradicate Childhood Obesity Foundation and got used to navigating around one of the biggest (and oldest) library establishments in the country.

And now I have my town library where I currently do effectively drive-bys: running in to acquire books on hold and returning the books I’ve read before taking the munchkin home. I also, on occssion, explore the small town libraries nearby, getting jealous at some of the beautiful redone buildings and children’s sections. Most of all I look forward to Fi getting older so I can instill my love of books in her, spread my love of libraries and share my memories made in them while we make new ones together.

Parting note: if you are someone that wonders how libraries will stay relevant in a society where most everything is accessible online and via our phones, you should read the book Bibliotech: Why Libraries Matter More Than Ever in the Age of Google by John Palfrey. Palfrey explains multiple reasons that libraries are important, besides just to borrow books. There are a few other books I’ve read about libraries and their history and/or significance that I’m happy to talk more about if asked.

all posts, community

eczema representation

pexels-photo-206501.jpeg

Though eczema isn’t the most glamorous of conditions, there is a growing body of representation of people with eczema in various social mediums, which is amazing because the more people that talk about our lives with eczema, the more information, studies, and community are built around it. As I come across more examples, I’ll update this post with the caption NEW.

 

TV SHOWS/MOVIES/DOCUMENTARIES/THEATER

  • One of the most notable now is Peter Moffat’s HBO series, The Night Of, which features the character John Stone, who suffers from aggressive eczema on his feet. Throughout the show we see him try various techniques to manage his eczema including bleach baths, Chinese medicines, airing his feet out, slathering Crisco and wrapping his feet in plastic wrap, UV light, etc.

phzntkc1kw2qbwe(photo source here)

  • (NEW) There is also a theater production called ECZEMA! created by Maria Fusco that embodies eczema in a creative way through writing, plays, music (including a musical backtrack of the sounds of Fusco scratching). There’s an interesting article written about it here.
  • (NEW) Briana Banos, a former performer and aerialist has created a documentary called Preventable: Protecting Our Largest Organ, to educate the medical field all about the horror of life with topical steroid withdrawal, and why topical steroids shouldn’t be so freely prescribed.

 

BOOKS

There are also a handful of personal storytelling books about people’s own experiences with eczema, with the authors all having very diverse backgrounds. For example:

And we’re also seeing a growing movement of children’s books about eczema such as:

  • Camille’s Itchy Twitchy Eczema by Candis Butler
  • I Have Eczema by Jen Greatsinger
  • Emmy’s Eczema (Dinosaur Friends) by Jack Hughes

 

COMICS

These prove a lot harder to find (which is unfortunate because I love webcomics!) but here are the two I stumbled across by Ms. Yoshimi Numajiri, (found on Tommy’s Skin of Rose blog).

 

ECZEMA ENTREPRENEURS

You also see a lot of entrepreneurs, whether they are doing eczema coaching of some sort, or have created a specific product/ product line. A few include:

conqueror-balm-photo-24_1024x1024@2x.jpg(photo source here)

INSTAGRAM

Naturally instagram has become an amazing platform for expression. There you can find awesome people including most of the entrepreneurs mentioned above.:

 

YOUTUBERS

Of course with youtube we have vloggers too- some that focus all on eczema and others that talk about eczema and its effects around the other aspects of their lives.

  • Zainab Danjuma
  • Brookie Beauty
  • Josh Wright – a pianist and piano teacher that made a video talking about his experience with eczema and TSW and what he used/did to get through it. He also made a post about it here.
  • Dr. Nina Ellis-Hervey – she gives advice about her general body care routines, and this particular video shows how she manages her eczema. She also includes how to make a homemade body butter.

 

BLOGGERS

And of course, there are tons of blogs out there made by dedicated individuals who are spreading the word about what living with eczema is like:

 

MODELING

More and more people are also trying to spearhead showcasing diverse bodies, especially in modeling.

  • Missguided – though not eczema-specific, a new part of their #KeepOnBeingYou movement has models showing off their bodies regards of having “imperfect” skin with the #inyourownskin campaign.
  • (NEW) Dove DermaSeries – creating a movement to help women “make peace with dry skin”, Dove specifically selected to have models with all sorts of skin conditions to show better representation of skin conditions and subsequently to help women feel comfortable in their skins

 

So if you are out there feeling like you suffer from a condition that no one gets, or that isn’t really seen in the media, don’t feel alone! There are lots of us out here each expressing ourselves and living with this condition in our own ways, just waiting for you to find us. And many of us are open to people reaching out as well. 🙂

all posts, the eczema body, treatments

there are germs on my skin! part 1

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A few years back I read a book called Farmacology by Daphne Miller. Miller is a physician who travelled around the United States to study farm practices and connect what she learned to how our bodies work as well as how the farming practices affect our health.

From that book I was inspired to learn more about sustainable habits and understand the complicated relationship between us and our land/food. I thought more about dirt and how we as humans wash and bathe excessively nowadays to kill all the germs, when some are not germs at all, but friendly non-harmful bacteria.

In 2013 I had a bad flare of eczema, and also got a staph infection. From thinking about the book again I realized that all systems have ecosystems of their own, including our skin, and that maybe the reason I had gotten a skin infection may have been because my natural skin cultures were not balanced (or in other words I had more of the bad kind of bacterias than the good). Studies are saying now, when you have a healthy mix of bacteria, they balance one another out and keep the “bad” bacteria in check, and as a result you get a strong skin barrier. When you lack the bacterial diversity, that’s when things go bad, and usually you’ll have an excess of Staphyloccocus aureus, which makes you more likely to have a skin flare. A study in 2013 showed that Staph a. makes a toxin that cause a release of other molecules we know are involved in the dysfunction of the skin in people with atopic dermatitis. It has become clear that unbalanced skin microflora can have particularly devastating consequences.

I’m going to briefly go into a little bit more about the skin and the skin biome. My information is coming from various articles including this one by NIH.

The job of our skin is to keep foreign organisms, dirt, etc out of our bodies. It has its own ecology with millions of diverse micro-organisms, some of which help the immune system learn which similar organisms are detrimental. As I said before, in healthy skin there is a balance of micro-organisms but when that balance gets disrupted it can result in infections or other skin issues.

Healthy skin is usually acidic and dry, and a cool temperature. Areas like the arms and the legs tend to be drier than other skin areas (like the groin, armpits, etc) and so they experience more temperature fluctuations. The acidity prevents certain bacteria, like Staphylococcus aureus, from colonizing the skin.  Other ways the skin fends off bacteria like Staph a. include using the hair follicles. The follicles have sebaceous glands that make sebum, a fatty substance that helps protect the skin by coating it with an acidic and antibacterial shield. Interestingly enough, in my experience, when my flares have gotten bad, I notice my hair (specifically on my arms and legs) falls out.

The skin is made up of multiple layers including the epidermis, which has a top layer called the stratum corneum that’s made of something called squames. Squames are the bits that are shed from the skin after about 4 weeks. I’d bet that the rate of squame shedding is what increases when someone has eczema, and the reason we shed so much when flaring/coming out of a flare.

Everything from clothing, antibiotic use, soaps, moisturizers, age, sex, exposure to environmental bacterias (like dirt and animals), and more can affect the micro biome.

A company that came up on my radar was Mother Dirt with their research partner AOBiome (I have no affiliation to either but I do think they are interesting!). AOBiome study chemicals in our modern skin/hair products and how they mess up our skin bacteria diversity. In particular, they look at a bacteria called Nitrosomonas that was on our skin before we used soap and detergents that messed up the bacteria’s ability to survive on us. AOBiome correlates that the decrease in this nonharmful bacteria is related to the increase in inflammatory skin issues.

Therefore, the goal of AOBiome is to create products that allow Nitrosomonas to live on our skin again, and at the same time help reduce skin inflammation. They are also researching eczema and how their products may be able to help (though according to their website they are still between phase I and phase II of 3 phases of product development). They are definitely a company to keep tabs on for the future.

 

REFERENCES

“AOB, Inflammatory Conditions, and Systenic Effects.” AOBiomeTherapeutics, https://aobiome.com/aob-inflammatory-conditions-and-systemic-effects/. Accessed 27 Sept 2018.

Grice E & Segre J. The skin microbiome. Nat Rev Microbiol. 2011 Apr;9(4): 244-253.

Kong HH, Oh J, Deming C, Conlan S, Grice EA, Beatson MA, Nomicos E, Pollet EC, Komarow HD, Murray PR, Turner ML, Segre JA. Temporal shifts in the skin microbiome associated with disease flares and treatment in children with atopic dermatitis. Genome Res. 2012 May;22(5):850-890.

Nakamura Y, Oscherwitz J, Cease KB, Chan SM, Muñoz-Planillo R, Hasegawa M, Villaruz AE, Cheung GY, McGavin MJ, Travers JB, Otto M, Inohara N, Núñez G. Staphylococus delta-toxin induces allergic skin disease by activating mast cells. Nature. 2013 Nov 21;503(7476):397-401.